Vicki's Wheelchair Conversion

Travelling inspires her.

Her want to go out, to go to places is so strong that it makes her push, motivates her to move.

Today Viki is 12 years old.
She have spent a lot of time in hospitals trying to find out what is her overall diagnosis but although she has lots of conditions and challenges Victoria is considered a SWAN (someone who has a Syndrome Without A Name).

 

She has neuromuscular disorder of genetic origin which doctors at Great Ormond Street cannot diagnose yet.
After almost 3 years on 100000 Genomes Project through genetics at Gosh, nothing was identified. 
At the moment it is a mystery to the health professionals but they also said that it is untreatable life-long disorder. Victoria's speech is severely affected and delayed but it never stoped her from finding ways to communicate with others. She would use her facial expressions, sign language, finger spelling and her special communication device all in one sentence to communicate with others. Her walking and posture are poorly, she gets tired very quickly with quite severe knees and feet pain. Her feet get more and more deformed. She finds it hard to keep up with her friends, falling over constantly due to loosing balance. Last muscle biopsy showed muscle atrophy. It also affects Victoria’s hips. She has DDH(developmental dysplasia of the hip) , the muscles do not support her joints properly. Victoria had bilateral rotational osteotomies at 5yo to correct the DDH, but 2 years post surgery the hips began to dislocate again Which creates additional problem/difficulty walking and running.

Victoria is very happy, lively, gentle, social, always smiling little person. She has been a real warrior through her ordeals. She is very popular in her school and much supported by her peers.

But the difficulty she and we as a family face is mobility. Victoria is very active, we love going outside to explore, travel in all terrains like going off road in the parks, going to a beach or even hiking in the mountains. We found a wheelchair provided by NHS is NOT equiped for such activities, can not withstand such vigourous use. We've changed three wheelchairs due to breakage in the last two years. Plus NHS budget cuts does not help our local wheelchair services in provision of better options. They were not able to provide such a thing as basic wheelchair spoke guards to stop Victorias fingers being caught in wheels.

 

After years of searching and researching, we have found a wheelchair that ticks most of the boxes - Trekinetic. 

 

✅ It can be tilted back in case Victoria falls asleep in her chair (which happens often as she gets tired easily), unlike in her basic chair she just slops forward or sideways, with no support.

✅ It is light and easy to maneuvre.

✅ It is equivalent to JEEP great Off Road experience ;) Doesn't get stuck in smallest cracks threatening to throw the passenger out of their seat. 

✅ SO much easier on carrers' wrists and back when pushing the passenger. 

✅ It is very well made and should last for years and grow with Victoria.

✅ It has good back support to avoid developing scoliosis. Offers unprecedented comfort and support, because it is anatomically formed to suit the human shape, not two pieces of fabric like in basic wheelchair.  

 

Without travelling, going outside, Victoria gets anxiety, drvelopes ticks /twitches. Travelling is a huge part of Vicki's physical and mental health.

But unfortunately this summer of 2020, me, Victoria's mum, had to face painful truth. As much as we hoped for Victoria to get stronger as she gets older, to be able to manually push herself in her chair, it didn't happen. She still struggles to push herself even on a slightest incline, or for periods of more than 2-4 minutes on a flat surface.
And me pushing her, I have really struggled this year due to getting physically weaker due to my own health issues, and age. 

We have contacted the maker of her current off road wheelchair, The Trekinetic, to convert her manual TREKINETIC K2 chair into TREKINETIC GTE

Ultra Lightweight Powerchair version. We really don't want to switch as there are no equally good off road wheelchair as Trekinetic, especially power electric. 
The quote was at least £7240 for conversion if no repairs required. But it does require repairs, it needs new breaks and new retractable foot plate which will cost hundreds of £.

With Covid-19 we got hit financially just like many many of you. 
So it will be a very slow process of saving and raising the funds for wheelchair conversion.

With support of our friends we have braved to start this fundraiser & are greatfull for any help. 
Thank you and bless your kind heart ♥️

You can follow Victoria's Instagram #roadster_child
www.instagram.com/roadster_child